My beautiful mom

My beautiful mom

4 words I so love to hear.

4 words I so miss saying.

I can’t believe it’s been 7 whole years since she died. My world simultaneously stopped moving and started spinning at a crazy pace and before I knew it, I had been waiting for 7 years for my mom to call and ask me why I haven’t called her today.

Not a day goes by that I don’t feel like I am missing an arm; Like there is a hole where part of my heart was, and even though I have created so much love around me, there’s just nothing that can fix it. You can’t grow back your arm, and you can’t get back your mom when she’s gone.

February-March is always so difficult, 2 weeks filled with the best and the worst: The Hebrew date of her death, then my daughter’s birthday, to be immediately followed 3 days later by the anniversary of her death. Sad, happy, sad, happy – a rollercoaster of emotions in such a short amount of time, that when I get off the rollercoaster, my head is spinning, I’m not sure where I am, and have no idea how to stand up straight again.

When I was putting Sophie to bed tonight, she asked me, “Why do you read to me, Mommy? Is it because I am awesome?” I answered, “Yes, you are awesome” and then she flung her arms around me, throwing me full force onto her bed, and said, “I love you, Mommy,” embracing me for two whole minutes. I swear I have no idea which one of us needed that hug more. It took all my strength, of which I possess none, not to break into tears in front of her.

Rarely a day goes by, if at all, when I don’t think of how different my life would be if she were here. If she knew my kids, if she would have been the difference between the postpartum depression I had with Sophie and not having it. It sounds terrible, but sometimes I wish I could just forget. Forget that she isn’t here by forgetting that she was.

But then I see my kids, and she is in all of them. She is in Sophie’s smile, in Chloe’s hands, and in Eitan’s eyes. The love she gave me passes through me and into them. I try to incorporate her into our world as much as possible.

“Sophie, you know what Savta (grandma) Rochale would say?”

“Yes, Mommy, she said you can’t have too much vanilla extract in a cake and to always put in a little bit more.”

So I pretend everything is marvelous. My family is healthy, and nothing else really matters. But I am missing that arm. Sometimes I forget it isn’t there and I can feel a phantom arm, but it isn’t really there. Everyone else sees the arm, though, they can’t see that it’s missing, so I will continue to go through life as if I am whole since nobody can see that I’m not.

 

Hi Mom,

It’s been a while since I’ve written on the blog. As opposed to the previous times that I have delayed posting because I was crying too much – or didn’t want to cry – this time a tiny, 3.320 kilo person has delayed my post (Best. Excuse. Ever.)

I’d like to introduce you to my brand new daughter, Sophie Rachel Perez. Yes – her middle name is yours.

She was born on February 28, a couple of weeks early. A week before she was born, The Boy made me go to the doctor because I had some pain the night before. Turns out it was actual contractions and I was 1/3 of the way through, so I was sent to the hospital.

The Boy joined me at the hospital, and while Baby’s heartbeat was being monitored, I suddenly started shaking. I was freaked out, both at the concept of having a baby (whom I am expected to keep alive) and the fact that you wouldn’t be here for any of it. It’s not that I would have had you in the delivery room with me.

Or maybe I would have. Who knows? It was never an option. It would be like asking me if I would prefer boxers to briefs.

But it wasn’t meant to be that day, and as my due date approached, I couldn’t help but feel that I was going to give birth early. You see, 2 weeks before I was due was to be the three year anniversary of your death. From the moment I found out I was pregnant (and that I, most likely, conceived on your wedding anniversary), I kept having a feeling that Baby was going to come very close to that date.

A week after the previous hospital visit, after my regular doctor’s appointment, I was sent to the hospital and was induced. 12 hours after getting to the hospital, she came. Within seconds I was transformed into a parent.

It was, without a doubt, the weirdest feeling in the world. I can’t describe it. Somehow, I was able to focus completely on this absolutely awesome family that just formed, and I thought of no one except Baby and The Boy.

The next few days were a blur, as were the first days at home, where I was mainly amazed that I was expected to keep a tiny person alive with less training than I had on our washing machine. But 6 weeks later I am beginning to feel the impact of your absence.

It’s so incredible to me how things change in a moment. I was transformed into a mother with the same ease and incomprehensible speed with which I was orphaned.

I didn’t wonder how you felt when I was born – it was obvious to me that you must have felt the same insane range of emotions that I felt. But What about everything else? Did you cry? Did you feel incompetent? Did you feel abandoned by almost everyone and everything you know? Did you ever feel like a bad mother? I can’t possibly know – I couldn’t have possibly felt more loved by you.

But this is some of what I am faced with now, and I wish you were to tell me I’m doing OK. It doesn’t matter how many friends tell me I’m a good mother, I don’t believe them. How would they know? You would tell me the truth. And, since you know me better than anyone, I would believe you.

Or not. How would I know? Boxers or briefs.

Luckily for you and us, you did have a chance to be a grandmother and pass on some advice to my sister. She, in turn, passes some on to me. I think of it as by proxy parenting.

Sophie looks sooo much like you (me). She has your (my) smile and your (my) facial expressions. She has the funniest facial expression when I take the bottle out of her mouth, the same one that you had. Except on you it wasn’t funny – it was your expression when we fed you when you were dying. When she looks at me with that expression, I am overwhelmed with awe and love for her, and sadness and aching for you. I can’t separate the two from each other. I’m happy she looks like you because it gives the affirmation of your presence, but it’s so hard to be her mother sometimes, through no fault of her own other than DNA.

Furthermore, as I suspected, I indeed gave birth in very close proximity to the third anniversary of your death. I was released from the hospital on the day of your memorial. If that isn’t the circle of life, I don’t know what is.

Hi Mom,

It’s been a while since I’ve written. My last post, when I just got engaged, pretty much described everything leading up to the wedding. I survived it all and even had a great time. A lot of people have been talking to me about it, asking me how it went, so here’s the list of what I thought I wouldn’t survive – and what ended up happening:

  • You won’t be there for me to tell you I am engaged. You weren’t, but I survived.
  • You won’t be there to help me with the preparations. But Grandma came with me to be fitted for the dress the first time (the seamstress offered her a job), my baby sister the second, and my good friend the third. Shanainai tied it for me and everything. I survived.
  • Your name will be listed as z”l (deceased) on my wedding invitation – or is it not supposed to be listed at all? I have no idea. A non-issue. We didn’t list any parents on the invite, we just made the invitation from us. That was easy. I survived.
  • You won’t be at the signing of the Ketubah. Neither was any other female. If anything, you were there, but I wasn’t. I didn’t even know when it happened. Survived.
  • You won’t be walking down the aisle. Grandma went with me instead. The rabbi suggested it, and I loved the idea. So did she. Definitely survived.
  • You won’t be under the chuppah with me. Grandma was. But then again, so were you. I know it was you that made that wind blow and knock everything over. Definitely survived.
  • You won’t be beaming down at me. Ever. No, but there’s nothing I can do about that. I guess I accepted it, so I survived.

The truth is, the  most stress I had about and from the wedding was that I was afraid of the attention. I was hoping no one would mention you when they saw me, and thankfully just about no one did, other than a few of the elderly. But I had that invisible “pretend you are someone else” wall up, and it worked perfectly.

In fact, everything went very smoothly, from the planning (which I hated, but I would have hated it if you were here, too, to be fair), all the way through the wedding. I had more offers of help than I knew what to do with, and The Boy and I knew what we wanted and wouldn’t let anyone bully us into something we didn’t want to do. Well, we did invite a few people I didn’t want to invite, but The Boy was right, it wasn’t worth the fight.

I had the sleeves from your dress removed, and the back opened up with a corset-type thing to tie it with, and the dress ended up being great. I would have preferred to be a few pounds lighter, but who wouldn’t… Dad’s best friend growing up actually asked me at the wedding if it was your dress – he somehow remembered your dress from 36 years before!

I’m so happy I got to wear it. There were a few times where I felt I  missed out on the choosing-a-dress part of the wedding, but the truth is it doesn’t matter – who wouldn’t rather wear their mother’s dress if it was as gorgeous as it is? There were times where I would suddenly think, I can’t believe my mom danced in this and ate in this and got married in this. I thought it would make me cry, but I loved it. By the way, I hope you didn’t take it personally that I changed clothes when we were dancing. I was just jealous of The Boy and wanted to be part of the t-shirt fun, too.

The wedding itself went by in a second and a half, like everyone said it would. I survived the family picture taking (mostly because people were already coming, so I just wanted it to be over), the reception was great, and the hike to the chuppah was a lot of fun. After a brief 10 minutes when we couldn’t find Grandma, she appeared, and the ceremony started.

It was the fastest 10 minutes of my life. I felt like an actress playing a part, just I was surrounded by people I love instead of random actors and stand-ins. At one point, the rabbi said that Jewish tradition says that 3 generations back come to visit at the chuppah, and that we have to mention your absence. I swear, he could have been talking about sauerkraut if you were to judge by my reaction. I can’t believe how calm I was. The only time a few tears fell down my face was when I heard Grandma sniffling beside me. Of course, The Boy is amazing and took  me hand the second he heard it, just to beam some extra strength into me (which worked, of course).

And then she asked when do we kiss already, so that was over.

The rabbi picked up one of the glasses of wine, started the first prayer, and then an insane gust of wind blew in and knocked everything over – the other glass, the ring, etc.

My reaction: Yey, The Boy broke the glass succesfully

The reaction of the 175 other people at the wedding: That was Talia’s mom.

Thankfully, I made no connection. I didn’t think about it at the chuppah, I didn’t realize it during the wedding, and only later when I got home, people started talking to me about it.

And as it turns out, everyone thought it.

So I’ve accepted it. Even though I am not mystical in any way, I kind of like the idea that you made a statement and said, “Ahem! I am here! I am in the dress and the wind and the glass of wine that just shattered on the floor.”

So the wedding went by smoothly, and honestly, it couldn’t have been more perfect, that is other than you actually being there. Everyone laughed and danced and ate and had a great time.

I waited a while to write about the wedding because I was waiting for a nervous breakdown. A week passed, another week passed, and another, and I was OK. I don’t know how. And then suddenly it was just over; Reports of the impending emotional storm were greatly exaggerated.

A few weeks after the wedding, I started feeling really weird. Not sick or anything, but just weird. After a few more weeks of weirdness, I decided to take a small test.

It had 2 definite lines on it. I am pregnant.

A few weeks later, the doctor was able to tell me exactly what day we conceived.

It was 5 days after the wedding.

On your wedding anniversary.

Dear Mom,

The Boy proposed on Saturday morning and we are now engaged. You would have loved him. If you are looking, then you already know how great he is. I just hope you aren’t watching at inappropriate times.

For the longest time, I wasn’t ready to get married, not because I wasn’t sure (let’s face it, I pretty much knew by week 3), but because of all of the logistics involved:

You won’t be there for me to tell you I am engaged.

You won’t be there to help me with the preparations.

Your name will be listed as z”l (deceased) on my wedding invitation – or is it not supposed to be listed at all? I have no idea.

You won’t be at the signing of the Ketubah.

You won’t be walking down the aisle.

You won’t be under the chuppah with me.

You won’t be beaming down at me. Ever.

It took me over a year to even bare the thought of figuring out what happens with the invitations, and that’s probably the least important of everything – I mean, we can just email everyone and get it over with. For the last year or so, everyone and their dog has been bugging me about when I’m going to get married, and I brushed it off with a swift, “when we decide.” It even got to the point where people were getting angry with The Boy, through no fault of his own.

They just didn’t know. And why should they? It’s not like I told them. Luckily for them, they haven’t been in this situation and can’t even fathom a wedding without their mother.

It got to the point where I wanted to elope. Forgo all of it, after all, it’s the act that matters, not the execution. But The Boy was right, our families would be hurt.

When Saturday happened – and believe me, I couldn’t have been more surprised (we have been talking about it, but I wasn’t expecting it Saturday) – I was pleasantly surprised. While half a year ago, the thought of not being able to call you made me cry, when Saturday happened, all I wanted to do was talk to my sisters. It’s not that I didn’t want to talk to you; I think it’s just that my brain knew I couldn’t, so it just sent me on the right course.

So I got the girls together and told them, and of course they screamed (and the kids asked why they’re screaming). And then I called Dad. And then I told your parents, Saba and Savta. And then I called my friends. And I did really well. I didn’t cry once, I didn’t get depressed once, and I seriously don’t think I would have been this way half a year ago.

I was doing so well, and then I wasn’t.

I went to look at rings with my friend, The Swiss, and the sales lady at last store we went into used to work at the mall where Dad had his restaurants. And naturally she asked about you.

Since it’s been two years since you left, I haven’t had to tell people you’ve died in a while; at least not people who knew you personally. I was able to get through the story fairly easily, omitting the most painful parts, like the last 4 months, and by doing what I always do when I talk about you now: Disconnect completely from the words coming out of my mouth.

But no, this encounter was made to make me cry. And I haven’t in a long time. I did a bit at night when your two-year anniversary came by when we were in Japan, but other than that, it’s been forever.

It started with her being shocked. And then telling me what an amazing woman you were, which I know. And then she had tears in her eyes, saying that the righteous die early, and I couldn’t hold it in anymore and I started to cry. And once I got my breath back, all I could say was, “She could have died in 20 years, and that still would have been too early.”

But that ship has sailed. You are gone. I am embarking on a major life event without you.

But you will be with me. You know how I always wanted to wear your wedding dress when I got married? I tried it on, and it fits me almost perfectly. So welcome to my wedding. You would only be able to be more present if you there in person.

I usually write when I’m down, but I had a bit of a delayed reaction. 2 weeks ago, my beloved (paternal) uncle died of cancer. He was sick for 14 years, lived well beyond what was predicted, yet this comes as little comfort. The fact is, my uncle was in his early 60s, by all accounts entirely too young to die.

His death comes less than a year and a half after my mother’s. Two blows in such a short period of time. I can’t imagine being in my father’s shoes: Losing a wife and a brother within less than 18 months of each other. My paternal grandparents gone, the last connection to his core family is now gone as well.

My uncle was awesome. He was incredibly loving. My father was always this huge superman in my eyes, the Man Who Could Do Everything. The man who, when I was 7, I proudly boasted would “beat you to grits” if you dared mess with me. But when his big brother would be with him, he looked like a 5 year old boy who looked up to his brother. And that is one of my favorite images in the world.

One, among so many, that I will now have to bring up in my mind, for lack of opportunity to see it in person.

My uncle’s passing was not a shock by any means. He had been touch and go for over a year. Luckily, we were able to see him 2 years ago when he came to visit my mother. A week or so before he died, he had a surgery that was supposed to alleviate some of his pain. What came out of the surgery was a This is It conversation, and a euthanasia wish.

A wish that was granted.

My uncle chose his future, or lack thereof, as it may be. On Sunday night a few weeks ago he called his (grown) kids and my father to say goodbye before he was given enough pain killers so he wouldn’t wake up, and on Thursday morning we got notice that he had passed.

For those few days, it was like my mom all over again, just waiting for the phone call/text message that would say it’s over. I got the message and it didn’t really hit me that he was really gone. For a few weeks. If with my mom I saw her decline, my uncle lived in South Africa, so I did not see him in the hospital, did not say goodbye, and did not attend his funeral. So really, for all intents and purposes, it’s as if he were still here.

But it has begun to sink in, and I can’t help but thank what the heck are we here for? People die so young, before they had a chance to do things, to make a difference. What was the point in my mother’s death? She hadn’t had a chance to teach me and my youngest sister how to be mothers, help us, calm us down. Am I supposed to think “She raised me, and I will raise kids who raise kids who raise the kid that will find the cure for cancer?” Because I have to say, I don’t really see any purpose here right now.

Don’t misunderstand me: I’m not suicidal or about to hurt myself in any way. But I feel resigned to the fact that we are just here to “be” and that’s it. I can’t help but feel sometimes that The Boy will be better off without me, and other than him, I haven’t made an impact of significance on any lives.

To some, this may be the inspiration to do something big. But I don’t think I have anything big to give. I don’t see how I can make my mother’s life – and death – worth something. Nor do I see any point in my uncle’s suffering. Unless their deaths help others understand how precious their parents are, I honestly don’t see the purpose.

And you know what? I would have rather not made those sacrifices to begin with.

Another day, another dozen emails by people whose loved one are dying. And again, I write and reply, wishing I could help, but knowing I can’t. But in the hopes that I can somehow help those of you who don’t email me and don’t comment, here’s what I wrote earlier today.

I have gone through every single thing you can imagine as well. Gone through the anger and sadness and guilt. Every last one. I know completely, 100% how you feel. I really wish I had wise words to say, but I don’t.

Except you can’t regret something you can’t change. I’m sure your mom still loved you as a rogue teenager, and what matters is that you grew up to be a wonderful adult.

I also felt my mom was taken from me long before she died. I still feel that now. The day my mom couldn’t remember our names was even more devastating than her death. Seeing her look at me and try to remember my name (she still knew who I was) is one of the worst memories I have.

Just before my mom got real bad and we had to put her in the hospice, she called me. I was in a dance class and I got so mad because she wouldn’t stop calling me and asking me for things. And then literally the next day she couldn’t talk anymore. And I have 2 options. One is to feel guilty about this for the rest of my life. And the other is to forgive myself. #1 is infinitely easier than #2. And sometimes I have to struggle with this decision several times in one day.

The only way for me to go on living is to not dwell on those times. Not think about the times where I just wished for everything to be over. Because those were thoughts of desperation. Thoughts of “I don’t know how to make it through the next hour or day or week.”

I have to believe that my mom knew that I didn’t mean it. Just like many teenagers yell at their parents that they hate them, even though it’s not true. They know you love them, and it may hurt, but they let it slide.

I also feel that I still need her almost every day. And every time a day ends, I’m in shock that I made it through it without her.

Focus on the good. I know it’s hard. It’s all I can do.

Focus on what you did have. She raised you completely. She made you this wonderful person that you are. She knows your husband. She was at your wedding. I know right now all you can focus on is that she won’t be here for the rest. My mom never even knew The Boy. And that is potentially a huge regret for me, seeing as he and I had worked together and known each other for 3 years before we started dating, and had I just agreed to go out with him 3 years earlier, then he would have known her and she would have known him and he would have known what my family had been like B.C. Before Cancer.

But I just can’t think about that. That’s not living. That’s just going through the motions. And while I’m currently going through some kind of an existential crisis (between my mom and my dying uncle), I have to believe that somehow her 56 years here had a purpose, even if I don’t know yet what it is, otherwise there’s no point to anything.

We all felt like terrible people when we put my mom in the hospice, and we each felt bad when we “went on” with our lives as she lay there dying. When we had someone sit with her so we could work, or the mornings that I couldn’t bring myself to get out of bed to go visit her and I would go straight to work, I always felt bad.

I break down all the time. I don’t mean that I have break downs thrice weekly, but they do come unannounced. And all I want to do is talk to my mom, even if it’s not about “it,” except the irony is that I need my mom because I don’t have my mom. Otherwise I’d be OK.

I know it’s hard, and everything just looks black, and you can’t see anything except black ahead of you. When I was in your shoes, just 18 months ago, and people would say that time would make things better, I couldn’t believe them. I wanted to, but I just couldn’t see how time would make things better.

But it did. Unfortunately, you still have quite a road left until you get to the end, and I’m sure the feelings are mixed for you like they were for me. You want it to be over, but you cling to a tiny piece of hope that something will suddenly change and she’ll be OK. You just want to move on with your life, but you feel guilty. You want to see her all the time, but it only makes you feel worse. And since she isn’t communicating with you anymore, when you sit with her all you have are your thoughts, and they are so much worse than reality.

Time hasn’t made me need her less or miss her less, it’s only made me realize I have no choice but to move on. When I was in your shoes, I didn’t even have that.

I recently reconnected with a friend of mine from college. She actually accidentally found me while searching for information about glioblastoma, and when she saw my name she contacted me to see if it was me. Very happy and sad moment. Happy to have reconnected with a formerly good friend from college, and sad because of the way she found me. Without knowing the story, it can’t be good. People don’t Google gliobolastoma for kicks.

Over the past week, I have received literally 16 emails from strangers and this friend asking me about what to do. How to deal with what they’re going through. Some are still taking care of their loved ones (wives and parents), and others are already dealing with their death.

As I wrote this answer to her, I realized that it may be helpful to others. I will always personally email anyone who contacts me back (as long as it’s not hundreds of emails a day, which I don’t see happening), but I wanted to reprint what I wrote. So here’s the unedited version. I never edit my posts, and the same goes for this letter to her. (She is married, but you can replace that with significant other, family, friends, etc.)

Dear friend,

I’m so sorry. I wish I had wise words, but I don’t. For me, the only thing that kept me sane was that I had started dancing ballet again, and I would go to the studio all the time. Literally 6 days a week (and I only didn’t go the 7th day because I didn’t have any classes I wanted to attend).

Running the dances and combinations through my mind is what would calm my mind down at night and let me sleep, however much I slept.

I was in a very different place than you are, though. I was alone, you’re married. On the one hand, you have support that I didn’t have. On the other, I was free to disconnect from everyone and do what I wanted. For me, being alone was definitely the right thing, and I don’t regret the fact that The Boy and I only got together after my mom died, but I do wonder what it would be like.

For me, disconnecting from everyone and going to the studio was what worked. I basically told my friends that I’d contact them when I could, and they would call to check up on me, but knew that I would eventually resurface. Everyone respected my request for peace and quiet, and not having to pretend around my friends was a relief. (As well as not fearing a sudden breakdown, which I hated doing in front of people.)

I basically learned to “lose control” at the end. I try not to cry in front of people, but if it happens, it happens. I just can’t control it anymore, and definitely couldn’t then, and it’s not that crying made me feel better, and talking about it didn’t make me feel better, but not holding it in – did. It didn’t make me feel better, but I wasn’t feeling worse for holding it in.

I wish I had a magic sentence that could help. I honestly don’t know how I got through it, but it involved being a lot quieter and a lot more alone than I usually am. I lost myself a bit, and I haven’t found myself completely again, but I don’t think I will. It changed me, there’s nothing I can do about it. And one of the things I’ve had to deal with is the fact that I’m not the person I was before and I won’t be again. I’m not that person who smiles and laughs all the time anymore. She surfaces, of course, but not as much as before.

I don’t really know what your mom’s prognosis is, and I hope she gets better really quickly.

The only thing I can say, and this is going to sound terrible (and it sounded horrible to me when my friend who lost his dad said it), is that everything leading up to her death, the whole time that we were taking care of her and the anticipation of the end, was the worst part. Once it was over and it was pure mourning, it got a lot easier. It’s like losing 100 lbs that you didn’t know you had. I hope to G-d that you aren’t in that place and that you don’t have to experience that, but know that it does end.

The pain doesn’t and the bad memories don’t, but it become easier to deal with.

My best suggestion to you, based on my experience, of course, and not anything else, is to find something that makes you happy, preferably a physical activity. For me it was dance (I danced for 14 years as a kid), for you it can be rowing. But being able to channel my nerves into something that made me happy, even in the weirdest way, helped me avoid spontaneous combustion. I know how you feel; I often thought I wouldn’t be able to wake up the next day, knowing what was ahead of me, but I did. It helped me a lot.

Also, the fact that it was a group activity (there are about 20-25 dancers in each class) helped too because other than a couple of them who became good friends of mine, no one knew what was going on with me. It was (and still is) a place that I could be free, that no one expected anything of me (because they didn’t know the “before” me) and their knowledge and acceptance of me was based solely on the “after” me. It eliminated having to pretend, and it let me be around people (excluding work, of course) without having to be around people I know. So I had the company, and I was out, but I had no obligations to anyone, and that helped.

If your husband is the type of person who you can cry to – do it. If you would rather do it alone – then that’s what you have to do. You can’t let anyone tell you how to deal with what you’re feeling. No one has the right to tell you that you’re doing it wrong. You need to know that. The only person who knows exactly how you feel is you, so you are the only person who can decide what you need and what’s best for you. What you need to do is (excuse my Swahili) say “F*** the world” and do what’s right for you.

So I guess my two suggestions are eliminating external pressures and finding a physical activity that you really enjoy (volleyball, running, rowing, pole dancing). These are the two things that, for me, were most helpful.